Share this:
bdade59
@bdade59

Posts: 12
Joined: Jun 19, 2018

CKD

Posted by @bdade59, Fri, Jul 6 8:09am

I was just rescent told I have stage 3 kidney disease,I felt the my world come to a stand still! I have 1 kidney lost one to cancer 30 years ago!.quickly I had to change my reactions,my thinking! …any one out there have lived a while in stage 3 and stoped the progression I would like to hear from you please.every body is different! But the encouragement is worth hearing!!!

REPLY

Good Morning, @bdade59. I want to extend a welcome to Mayo Connect. I am happy that you have joined the Kidney/Bladder Group. I, also am living with one kidney, but mine is due to transplant. And so I think that I can understand what you mean when you say that your 'world has come to a stand still'.

Here is some information that I want to share with you about CKD
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
And here is a chart about the stages of CKD..
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

Here are a couple of discussions where members have talked about Stage 3 CKD .
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

https://connect.mayoclinic.org/discussion/stage-3-ckd/

bdade59 Can you tell me what your doctor has said is causing this condition – Is there an underlying cause? What has your doctor told you to do in order to protect your kidney?

Rosemary

Liked by cehunt57

I have had stage 5 CKD for 3 years now. Mine is the result of atypical hemolytic uremic syndrome. The aHUS was a reaction to the chemo I received for pancreatic cancer. Once the aHUS was cured, I have not had any further deterioration of my kidneys. I am not yet on dialysis, but my nephrologist keeps telling me I may need to start at any time. I was at Mayo in June. Still cancer free after 3 1/2 years. Started talking about a kidney transplant. I can start the testing process, but I can't have a transplant until I am cancer free for five years.

Liked by cehunt57

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

Liked by cehunt57

@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

Jump to this post

After having pancreatic cancer, I thank God everyday that I am still alive. When dialysis becomes necessary, I will do it because it will help me to enjoy the life I have. Because of my Whipple procedure, I will not be able to do peritoneal dialysis. I had fistula surgery 2 1/2 years ago. My family physician says I should go to a dialysis center (there is one 8 miles from home) but my nephrologist says I am a good candidate for home hemodialysis. I have already attended a class on hone hemodialysis at Da Vita. What is most frustrating for me is that the diet for diabetes does not match my diet for CKD.

@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

Jump to this post

@marvinjsturing, I admire your strength and your attitude. It sounds to me that you are staying on top of your care by educating yourself for what might lie in your future.
I found a discussion where some members have shared your exact words about their confusion with diets. Have you consulted with a nutritionist for guidance? Your nephrologist should be able to schedule you with one.

In Diet for diabetes and stage 4 CKD – very confusing – some others have shared similar concern, You might give it a look.
https://connect.mayoclinic.org/discussion/diet-for-diabetes-and-stage-4-ckd-very-confusing/

Rosemary

Liked by cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

Jump to this post

Thank you so much! You helped me more than you would ever know!!

Liked by cehunt57

@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

Jump to this post

It's just good to know it's been 3 years it give me more hope I took a 2 hour class..and when she finish I was scared to death. She talked with no feelings or compassion.i guess after teaching the class for 6 years it just become a job!..so Thanks you really gave me hope and my trust in God…Faith! IAM trying to stop it or slow it down..I know I can't reverse it. Thanks!! Keep postive! And keep moving forward!!!

@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

Jump to this post

@cehunt57, I had a doctor's appointment on Thursday, May 8, 2014. Because of my symptoms, my doctor scheduled a CT scan for the next day. Instead of waiting several days for the test results, I was back in my doctor's office 15 minutes after the scan. By that afternoon, I had appointments scheduled at Mayo in Rochester. Two days after my initial diagnosis, my wife and I were supposed to fly to Vegas for a conference. We thought we had a morning flight, but found out it was an evening flight. So we went to church with our son. That morning, the preacher's sermon was from Romans 8:28 – All things work together for the good of those who love God. The journey was not easy – surgery. 6 months of chemo and then another year of treatments for my kidneys. But we knew from the very beginning that God was going to be with us. As a side note: 3 weeks after preaching that sermon, the pastor's wife died of pancreatic cancer. God has proved himself to be faithful time after time in our journey. Stay strong in your faith.

@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

Jump to this post

I can feel your warm tone when I read you seem so thankful and so genuine I thank you for taking out the time to relpy back! I will keep the faith that's all we have! He first loved us.we all benefit from undeserved kindness …Tie a Knot and hang On your story has encourage me thank you so much for sharing.

@rosemarya

Good Morning, @bdade59. I want to extend a welcome to Mayo Connect. I am happy that you have joined the Kidney/Bladder Group. I, also am living with one kidney, but mine is due to transplant. And so I think that I can understand what you mean when you say that your 'world has come to a stand still'.

Here is some information that I want to share with you about CKD
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
And here is a chart about the stages of CKD..
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

Here are a couple of discussions where members have talked about Stage 3 CKD .
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

https://connect.mayoclinic.org/discussion/stage-3-ckd/

bdade59 Can you tell me what your doctor has said is causing this condition – Is there an underlying cause? What has your doctor told you to do in order to protect your kidney?

Rosemary

Jump to this post

Yes! ROSEMARY IT WAS HIGH BLOOD PRESURE BUT ITS UNDER CONTROL NOW! ITS MY FAULT I DID NOT WANT TO TAKE THE MEDACATION CAUSE IT WOULD DAMAGE MY KIDNEY (1*) FRUTHER BUT I DIDNT KNOW IT WOULD PROTECT KEEP MY PRESURE DOWN AND STILL DAMAGE MY KIDNEYS..IAM SO COFUSE…my doctor said I could come out of it and go back to stage 2 but the more I read..nah! Everything say..it may..slow down…but not stop progression…IAM getting my chlestoral down trying hard with out meds..and my A.c.1 is broderline…getting it down if I don't starve my self first..just joking!.

Liked by cehunt57

@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

Jump to this post

I did not like this question…guess IAM still in a little of..please not yet.I haven't looked that far…it sickens me just the thought of it…to me it means …well IAM trying to keep postive attitude is everything!!..don't know if I would do dailalis..not sure at this point.

@rosemarya

Good Morning, @bdade59. I want to extend a welcome to Mayo Connect. I am happy that you have joined the Kidney/Bladder Group. I, also am living with one kidney, but mine is due to transplant. And so I think that I can understand what you mean when you say that your 'world has come to a stand still'.

Here is some information that I want to share with you about CKD
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
And here is a chart about the stages of CKD..
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

Here are a couple of discussions where members have talked about Stage 3 CKD .
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

https://connect.mayoclinic.org/discussion/stage-3-ckd/

bdade59 Can you tell me what your doctor has said is causing this condition – Is there an underlying cause? What has your doctor told you to do in order to protect your kidney?

Rosemary

Jump to this post

@bdade59, It is frustrating, isn't it? You are doing the right thing by taking this seriously. (too many people don't) I encourage you to keep thinking and focusing on the positive. Your doctor has told you could reverse the kidney condition. And I have read the powerful positive messages that you have received from other members.
Remember that everybody is different. And the things that you read will present the entire range of possibilities, so don't get discouraged.

It probably does feel like you are starving yourself sometimes – because you are constantly thinking about and monitoring food. From what I've heard my friends tell, it gets to be easier as it becomes a 'new' normal routine.

Keep in touch.
Rosemary

Liked by cehunt57

@rosemarya

Good Morning, @bdade59. I want to extend a welcome to Mayo Connect. I am happy that you have joined the Kidney/Bladder Group. I, also am living with one kidney, but mine is due to transplant. And so I think that I can understand what you mean when you say that your 'world has come to a stand still'.

Here is some information that I want to share with you about CKD
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
And here is a chart about the stages of CKD..
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

Here are a couple of discussions where members have talked about Stage 3 CKD .
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

https://connect.mayoclinic.org/discussion/stage-3-ckd/

bdade59 Can you tell me what your doctor has said is causing this condition – Is there an underlying cause? What has your doctor told you to do in order to protect your kidney?

Rosemary

Jump to this post

Thank you so much you are so encouraging.

Liked by cehunt57

I was diagnosed with CKD about 15 years ago. About 10 years it progressed to Stage 3. I am now 3b, hovering about 32% for last 1.5 years. The cause of my CKD is a very rare disorder where collagen buildup is blocking the filtering components. I placed myself on a fairly strict kidney diet, and mesh it in with a gout friendly diet. No oranges/bananas/potatoes/tomatoes/pork/purines/shellfish, etc. While the Drs said it wasn't necessary, I said it was, to help control any decline. My advice is to be proactive in your treatment, don't wait for the medical team to tell you next step.

Please login or register to post a reply.